Supporting families and caregivers of children with disabilities through a parent peer mentor (PPM): experiences from a patient-oriented research network.

BACKGROUND: The CHILD-BRIGHT Network created a parent peer mentor (PPM) role to support other parents who were engaging as partners in the different research projects and activities of the network. We aim to describe how a PPM functioned to support parent-partners of children with disabilities in research projects within the Network. METHODS: In this case study, the PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. When consent was provided, the PPM recorded interactions with network parent-partners in a communication report in an Excel form. Also, verbatim transcription from one in-depth interview with the PPM was included for data analysis using qualitative description. The Guidance for Reporting Involvement of Patients and the Public (GRIPP2-SF) was used to report on involvement of patient-partners. RESULTS: A total of 55 interactions between 25 parent-partners and the PPM were documented between May 2018 and June 2021. The PPM's support and liaison role contributed to adaptation of meeting schedules for parent-partners, amendment of the compensation guidelines, and ensuring that internal surveys and the newsletter were more accessible and engaging. The PPM also facilitated community-building by keeping parent-partners connected with researchers in the Network. Families and caregivers in the Network were comfortable sharing their experiences and emotions with the PPM who was also a parent herself, allowing researchers and the Network to learn more about parents' experiences in partnering with them and how to improve engagement. CONCLUSIONS: We highlight the important complementary role that a PPM can play in enhancing patient engagement in research by better understanding the experiences and needs of parent-partners.

In this paper, we add new insights into the complementary role of the Parent Peer Mentor (PPM) in promoting optimal patient engagement practices in a national patient-oriented research network. The PPM approached 50 parent-partners and scheduled a 1-on-1 initial telephone call to offer support for any issues arising. We analyzed the recorded interactions between the PPM and the network's parent-partners of children with brain-based disabilities as well as an interview with the PPM. The PPM's liaison role contributed to establishing reciprocal connections with parent-partners in a nation-wide research network. The perceived impacts at the individual level included: (1) parents felt more connected to the PPM and were comfortable sharing their experiences and emotions, and (2) researchers learned more about parents' experiences in partnering with them and were able to address the issues raised such as adjustment of the meeting schedule and clarification of roles within the research team. At the Network level, adjustments were made based on feedback from the PPM to include structural adaptations to the compensation guidelines and use of lay language in our communications to patient-partners. Community-building and authentic partnerships were enhanced by the increased understanding of the experiences of patient-partners.

Determining the benefits and drawbacks of parents using personal connections and social networks for recruitment in research projects: a qualitative study.

BACKGROUND: It is becoming more common for parents of children with chronic conditions to join research teams as partners. Parent partnerships can help align research with what is relevant and important to families. It is also common for parent partners to be asked to share information about a study through their personal networks, which supports study recruitment. In this parent-led study, we explored parents' experiences when working together with researchers in patient-oriented research studies, in relation to study recruitment. METHODS: Demographic data were collected through a brief online survey (SurveyMonkey®) and analysed descriptively (n, %, median (interquartile range; IQR)). Qualitative data were collected through focus groups and interviews (July to October 2021), transcribed verbatim, and analysed thematically. Parent co-leads were involved in every stage of the study, including study design, recruitment, data collection, analysis, interpretation, and knowledge mobilization. RESULTS: Fifteen parents (n = 14 women) who had research partnership experience participated in this study. Most (n = 13) participants self-identified as White or of European descent. The majority (n = 10) had partnered in 1-3 research projects, while five participants had partnered in 4 + projects. Parents had a median of 3 years (IQR: 5) of partnership experience. We identified the following three themes: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the research topic, and a desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant's willingness and ability to share study materials. Learned decision making reflected parents' evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants' recommendations for researchers who work with parent partners, and recommendations for parents as they approach research partnerships. CONCLUSIONS: Experiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome. This study yields a set of recommendations guiding future research that engages parents as team members.

It is becoming common for parents of children with chronic conditions to join research teams as partners. These partnerships help ensure that research is relevant to families. In partnership roles, parents are often asked to share information through their personal networks to support recruitment. In this parent-led study, we explored parents' experiences related to sharing research information through their personal networks. Through interviews and focus groups, our team asked 15 parents with research partnership experience how they felt about using their personal connections to help recruit for research. Interviews and focus group recordings were transcribed. We looked at the data to find common patterns, or themes, and found three: motivations, authentic partnerships, and learned decision making. Each theme included reflections about recruitment, and about research partnership in general. Motivations included a personal connection to the research topic, a connection to the community impacted by the topic, and the desire to create change. Authentic partnerships were important for a meaningful experience, and enhanced participant's willingness to share study recruitment materials. Learned decision making reflected parents' evolving decisions and practices related to sharing study information or personal information to support research. We provide a summary of participants' recommendations for researchers who work with parent partners, and for parents as they consider partnerships. Experiences shared by parents who have partnered in research provide valuable information to inform recruitment methods and improve team functioning. Parent partners expressed a willingness to support recruitment and valued a strong research team working together for a common outcome.

The Language of Research: Creating Spaces to Better Understand How We Speak and How We Are Heard.

Anti-Indigenous racism education and cultural safety training can help cultivate greater awareness and hold the potential to encourage Western-trained researchers to work in solidarity with Indigenous partners to resist the structural status quo. The purpose of this article is to provide an overview and author reflections on an immersive educational series "The Language of Research: How Do We Speak? How Are We Heard?". The series was developed by a Canadian group that included an Indigenous Knowledge Keeper, non-Indigenous researchers, and parent partners, all of whom have training or experience in Westernized research and/or health care. The 6-session virtual series was made available through a provincial pediatric neurodevelopment and rehabilitation research group in Canada. Participation was open to a broad audience, including but not limited to researchers, clinicians, families, and health-care professionals. This learning opportunity was developed as a starting point for ongoing integration of an anti-racism perspective within our provincial research group and began through conversation about how words or language typically used in Western approaches to research, ("recruit," "consent," "participant") could be unwelcoming, exclusionary, and harmful. Topics that were explored during the sessions included Using Descriptive Language/Communication; Relationships and Connection; and, Trust, Healing, and Allyship. The article aims to contribute to the ongoing dialogue related to disrupting racism and decolonizing research in the fields of neurodevelopment and rehabilitation. Reflections about the series are offered by the authorship team throughout the article, to solidify and share learning. We acknowledge this is only one of many steps in our learning.

Connecting for Care: a protocol for a mixed-method social network analysis to advance knowledge translation in the field of child development and rehabilitation.

BACKGROUND: Connections between individuals and organizations can impact knowledge translation (KT). This finding has led to growing interest in the study of social networks as drivers of KT. Social networks are formed by the patterns of relationships or connections generated through interactions. These connections can be studied using social network analysis (SNA) methodologies. The relatively small yet diverse community in the field of child development and rehabilitation (CD&R) in Canada offers an ideal case study for applying SNA. The purposes of this work are to (1) quantify and map the structure of Canadian CD&R KT networks among four groups: families, health care providers, KT support personnel, and researchers; (2) explore participant perspectives of the network structure and of KT barriers and facilitators within it; and (3) generate recommendations to improve KT capacity within and between groups. Aligning with the principles of integrated KT, we have assembled a national team whose members contribute throughout the research and KT process, with representation from the four participant groups. METHODS: A sequential, explanatory mixed-method study, within the bounds of a national case study in the field of CD&R. Objective 1: A national SNA survey of family members with advocacy/partnership experience, health care providers, KT support personnel, and researchers, paired with an anonymous survey for family member without partnership experience, will gather data to describe the KT networks within and between groups and identify barriers and facilitators of network connections. Objective 2: Purposive sampling from Phase 1 will identify semi-structured interview participants with whom to examine conventional and network-driven KT barriers, facilitators, and mitigating strategies. Objective 3: Intervention mapping and a Delphi process will generate recommendations for network and conventional interventions to strengthen the network and facilitate KT. DISCUSSION: This study will integrate network and KT theory in mapping the structure of the CD&R KT network, enhance our understanding of conventional and network-focused KT barriers and facilitators, and provide recommendations to strengthen KT networks. Recommendations can be applied and tested within the field of CD&R to improve KT, with the aim of ensuring children achieve the best health outcomes possible through timely access to effective healthcare.

"Another Tool in Your Toolkit": Pediatric Occupational and Physical Therapists' Perspectives of Initiating Telehealth during the COVID-19 Pandemic.

AIMS: Pediatric occupational and physical therapy service delivery via telehealth increased during the COVID-19 pandemic. Real-world experience can guide service improvement. This study explored experiences, barriers, and facilitators of initial telehealth implementation from the therapist's perspective. METHODS: Qualitative descriptive approach. Semi-structured interviews were conducted with occupational therapists (n = 4) and physical therapists (n = 4) between May-June 2020. Interviews were recorded, and transcribed verbatim. Data were coded inductively to generate themes, then re-coded deductively to classify barriers and facilitators to telehealth acceptance and use using the Unified Technology Acceptance Theory. RESULTS: Participants had 16.5 [(2-35); median (range)] years of experience (3 months with telehealth) and predominantly worked with preschool children. Three themes about telehealth were identified: a practical option; requires skill development and refinement; beneficial in perpetuity. Most frequently cited barriers were the lack of opportunity for 'hands-on' assessment/intervention and the learning curve required. Most frequently cited facilitators included seeing a child in their own environment, attendance may be easier for some families, and families' perception that telehealth was useful. CONCLUSION: Despite rapid implementation, therapists largely described telehealth as a positive experience. Telehealth facilitated continued service provision and was perceived as relevant post-pandemic. Additional training and ensuring equitable access to services are priorities as telehealth delivery evolves.